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The following case report is from a patient perspective and taken from the Burden of Psoriasis Report
I was first diagnosed with psoriasis when I was 29, I woke up one morning with an itchy scalp and it got worse and worse so I went to my GP to see what he thought. He told me it was psoriasis. I had heard about psoriasis before and was familiar with the skin condition as my brother had it quite severely.
My own psoriasis progressed very rapidly; it got worse and worse each day, and spread very quickly to the rest of my body until it affected most of my body. Around that time I was working as a general manager in a clothing company, managing 350 staff members and was very successful. But unfortunately I had to leave the job as my psoriasis became worse and I wasn’t able to manage. My hands were covered in psoriasis; I had lumps on my face and neck and found it very awkward to hide. I was very aware of it and my skin would flake off everywhere, on my clothes and everywhere around me.
After six to seven months I applied for a trial with a professor in Hume Street Hospital who was studying patients with psoriasis. I went to Hume Street Hospital three days a week for light therapy for three months. At that stage 75 per cent of my body was covered in psoriasis, including my fingers and toenails, and it was very painful. The light therapy annoyed my skin but it did clear up my psoriasis for a short while.
However, it came back even worse and soon afterwards my body was 85-90 per cent covered in plaques. I found it very difficult to sit down and difficult to move as my skin was so sore and tight; my clothes would be bloodstained by the end of the day. I was constantly moisturising my skin as often as I could but nothing helped.
In 2003, my mother passed away and my psoriasis became even worse. I went in to the hospital clinic straight after her funeral and was given light therapy by my dermatologist to control my skin condition.
My dermatologist was involved in a trial for a new treatment at the time and I was put on the trial. After the third injection it started to work and I remained on the drug for three years. It worked very well for me. The treatment cleared my psoriasis, I lost weight and I felt great. However, after a while I stopped using the treatment.
Around this time I developed pneumonia and my psoriasis flared up again and became very bad. I continued to use bath treatments and light therapy. I was put on a different treatment and had to use moisturising cream constantly as well. It worked for a while but the treatment gradually stopped working for me.
Over the years I have had to take a lot of time off work due to my psoriasis. I have worked in various industries in a variety of roles but was always terrified that my psoriasis would come back. At home, my clothes and sheets were always ruined. It had a very negative effect on all of my relationships.
I would describe my psoriasis as ‘a monster’.
My whole life has been taken up by my psoriasis, constantly trying to manage it and treat it all day long. I have spent the maximum amount of money I could on medication, moisturisers, and treatment and at times I have felt very low. At one stage I did not care if I lived or died, there was no relief from this condition. It was an incredibly debilitating disease for me and when my brother got bowel cancer I compared our situations, wishing I had that rather than my psoriasis.
In 2014, I began a new treatment and it started working after just two injections. I had not been on any treatment for seven to eight weeks beforehand so my skin was extremely bad and I felt like I was walking like a robot, as my skin was so tight.
My psoriasis has completely cleared up and I do not need to moisturise or take treatment baths with this treatment, which is incredible. I have so much more time now without constantly having to look after my skin all day. Before now I was going to the hospital skin clinic five days a week, but now I only need to visit once a month. I am very happy I signed up for the trial and am lucky to be receiving such a good treatment. I am much more positive now about my psoriasis.
Psoriasis is a chronic, debilitating inflammatory skin disease, characterised by an accelerated rate of turnover of the top layer of the skin. Although it is a chronic condition, its course may be variable, with flare-ups and remissions. The cause of psoriasis is not fully understood but evidence suggests that there is a strong genetic component and that environmental factors also play a role, such as emotional stress or infection, which may trigger the first episode of psoriasis or exacerbations.
More than 73,000 people are affected by psoriasis in Ireland, and 9,000 of those have a severe form of the disease.
Infograpic from The Burden of Psoriasis report
Psoriasis has a significant impact on quality-of-life issues, including feelings of embarrassment and links to other illnesses such as diabetes, cardiovascular disease, and depression.
A new report, the first of its kind, reviews the prevalence, incidence and severity of psoriasis in Ireland. Deputy Jerry Buttimer, Chairperson, Joint Oireachtas Committee on Health and Children, officially launched The Burden of Psoriasis report earlier this year.
The report notes that current European guidelines define treatment success for moderate to severe psoriasis as achieving a Psoriasis Area and Severity Index (PASI) 75 response (ie, achieving a 75 per cent clearance of psoriasis symptoms as per the PASI criteria). This clinical endpoint may, however, be out of date, the report asserts. The majority of psoriasis patients now achieve PASI 90 responses in randomised trials of the latest-generation biologic agents. In addition to this, studies report that the complete visible clearance of psoriasis (as per the PASI criteria) is now becoming a realistic therapeutic outcome. A recent study reports that 24.1 per cent of patients achieved PASI 100 (completely clear skin) after 12 weeks, efficacy that increased close to 40 per cent after 52 weeks. With the clear gains in quality-of-life with PASI 90, it may now be pragmatic to revaluate the therapeutic gold standard for people who are treating or are being treated for psoriasis, the report states.
The report authors analysed co-morbidities associated with psoriasis, which include psoriatic arthritis, hypertension, diabetes, and cardiovascular (CV) events such as stroke and myocardial infarction.
While there is still some debate regarding how exactly these associations manifest, a growing consensus within the published literature suggests that there is an increased risk of CV disorders, particularly when psoriasis is severe, possibly due to shared inflammatory pathways.
Infographic from The Burden of Psoriasis report
Specifically, the report highlights the potentially high number of Irish patients with psoriasis that may also bear the burden of psoriatic arthritis (7,133), and that patients with severe psoriasis have a 43 per cent increased risk of stroke.
As a consequence of these associated co-morbidities, psoriasis patients are likely to experience diminished quality-of-life and are more likely to require urgent medical care, hospital admission, and outpatient specialist care than those without these co-morbidities, the report notes.
Psoriasis places a considerable burden on those who have the disease, and the report examines in detail the impact on the quality-of-life of the individual. The physical factors associated with the disease cause self-consciousness, embarrassment, and stigmatisation, which can ultimately lead to depression and in some cases suicidal ideation. Psoriasis also impacts on the work lives of those who have the condition with reports of absenteeism, presenteeism, work place discrimination, and restriction of career choice all associated with psoriasis.
An attitudinal survey of people living with psoriasis was conducted to coincide with the report, which focused on the psychosocial impact of psoriasis to illustrate the burden on relationships, career, and day-to-day life.
The findings illustrate the wide-reaching impact that this skin disease can have on all aspects of patients’ lives, and the negative emotions that can be felt by those living with psoriasis. Of the 119 respondents, the majority were female (77 per cent), and the largest group to answer the survey were those aged 34 to 41 years of age.
An overwhelming number of those surveyed (93 per cent) reported having felt embarrassed by their psoriasis; with 77 per cent indicating their skin has made them ‘hide themselves away’. In addition to this, three-quarters (73 per cent) of those surveyed agreed that their psoriasis has negatively impacted on their social life.
With regard to the impact of the disease on the personal lives of those surveyed, it was revealed that over half (54 per cent) agreed it has had an impact on their love life and a third (33 per cent) of respondents admitted that their skin condition has prevented them from dating entirely.
One-in-five (21 per cent) respondents admitted that their psoriasis has stopped them from applying for a job. The report indicates that people with severe psoriasis are almost twice as likely to be unemployed versus those who have mild psoriasis.
Prof Louise Barnes, Consultant Dermatologist, St James’s Hospital, Dublin, and co-author of the report, pointed out that psoriasis can often be misunderstood and without effective management can lead to extremely poor quality-of-life issues.
She said it is vital that dermatology is invested in, in order to improve patient care and management of this chronic skin disease, including providing equitable access to specialised care and innovative treatments.
Speaking at the report launch, Prof Eoin O’Brien, Chairman, Irish Skin Foundation, welcomed its contribution to the understanding of the prevalence and impact of psoriasis in Ireland.
“Psoriasis can be very difficult to live with and, left untreated, has been linked with heart conditions, depression and anxiety. The ISF urges policy-makers to allocate adequate resources to ensure appropriate and accessible treatment for all children and adults with psoriasis so they may live unburdened by the disease.”
The Burden of Psoriasis report is supported by the Irish Skin Foundation and produced by Novartis Ireland in conjunction with the National University of Ireland, Galway, with clinical input from leading dermatologists Prof Louise Barnes, Prof Brian Kirby, Prof Oliver Fitzgerald, and Dr Anne Marie Tobin.